Saving Sammy

[trademein]

I was on the Saving Sammy web site and saw they had a kit you can buy. It's called Back to Health Tool Kit. Has anyone bought this? Is it worth getting?

[peglem]

I was on the Saving Sammy web site and saw they had a kit you can buy. It's called Back to Health Tool Kit. Has anyone bought this? Is it worth getting?

 

Here's a thread w/ lots of opinions about that:

http://www.latitudes.org/forums/index.php?showtopic=8443&st=0&p=69735&hl=beth%20maloney&fromsearch=1entry69735

 

I think most people agreed that the information on this forum is better, more accurate, and much cheaper!

[Kbossman1]

I bought this kit, and I can tell you that it's nice to have, but Augmentin didn't work for us anyways. I can email it to you if you would like.....just let me know. It seemed to make sense to our doctor anyways. Thanks,

Kelly

[NMom]

I bought the kit when I was desperately searching for a starting point to fight this disease. It was helpful in two ways...it gives you a format to start a daily log. I didn't use that format in the end but it made the point that you should and that has been a huge help when meeting with various doctors, etc. I also wanted the list of lab tests that I should have run and it was included in the kit. I had those run before I ever saw a doctor and that has been oen of the best things I did...every doctor I've seen since has looked at the lab results. But...having said all that...I had not yet found this forum and you can get all that information here and it's probably more up to date now. I'm happy to send you the list of tests that I had run initially with my local pediatrician and the format I use for our daily log. If it was me...I'd save the $$$$ now that you've found the forum.

[trademein]

Thanks for all the tips!!

[Priscilla]

Having known many PANDAS mom's here, there isn't one that any of us wouldn't help for free (now wasn't that a nice way of making a point :-)I must admit I've never seen the "kit" but I believe many of us found that the way Sammy was helped didn't always do it for our kids, and please correct me if I'm wrong but I would expect in the SS kit, ASO and Anti-Dnase elevated titers are needed for a PANDAS diagnosis and so many of us found that to not be true and actually prevent our kids from getting desperately needed help. Dr. Cunningham says 35% of all PANDAS kids, who have indeed had strep, don't have elevated titers, so that would be a concern for me. But maybe I'm wrong :-)I would imagine some info in there is good, but I think with the great minds here we could combine our thinking and make a very, very good complete FREE kit for moms. What do you say?

 

Nancy

 

 

I absolutely agree. I was very disheartened when during my desperate search for help I was presented with a fee for something that may not even work/apply to my child. I am sure many of you agree, it is now my plight to educate others about this illness, and I am also keeping a journal, any one who wants to see what we have done can see it for FREE, that is my duty, my promise to GOD, to HELP others. Sorry, thats a little sore spot.

[trademein]

Having known many PANDAS mom's here, there isn't one that any of us wouldn't help for free (now wasn't that a nice way of making a point :-)I must admit I've never seen the "kit" but I believe many of us found that the way Sammy was helped didn't always do it for our kids, and please correct me if I'm wrong but I would expect in the SS kit, ASO and Anti-Dnase elevated titers are needed for a PANDAS diagnosis and so many of us found that to not be true and actually prevent our kids from getting desperately needed help. Dr. Cunningham says 35% of all PANDAS kids, who have indeed had strep, don't have elevated titers, so that would be a concern for me. But maybe I'm wrong :-)I would imagine some info in there is good, but I think with the great minds here we could combine our thinking and make a very, very good complete FREE kit for moms. What do you say?

 

Nancy

I'm in with you wonderful mothers and fathers here. Thank you for all the input. This fourm is a life saver for my family.

[EAMom]

Dr. Cunningham says 35% of all PANDAS kids, who have indeed had strep, don't have elevated titers, so that would be a concern for me.

 

 

 

Yup... and Buster's survey found an even lower rate of elevated titers, esp. with girls. Only 15% of girls had elevated ASO or anti-dnase B over the course of the illness.

 

http://www.latitudes.org/forums/index.php?showtopic=9495&start=0&p=79704&hl=+survey%20+girls%20+boys&fromsearch=1entry79704